On the American 'culture of life' and death
by Andy Coates
Sorry to flog the dead subject and apologies for the length.
The New England Journal of Medicine will shortly publish two pieces on the Schiavo case. They are available (no need for password) in pdf format at http://content.nejm.org/early_release/index.shtml#3-22-05. I won't discuss these, but mention them for interest, given the recent enlightening discussion. These articles seem to be an indication of how commonplace difficult end-of-life decisions have become in modern medical practice -- and how state intervention in these decisions remains utterly unwanted.
A few years ago I was in training and on duty overnight. I took a call from a doctor at a small rural hospital who had a patient that he believed had suffered an intra-abdominal catastrophe. She had hypotensive shock. Would I please accept the patient in transfer, since our hospital had surgeons and an ICU available (and his hospital had neither)?
I accepted the patient and arranged for an urgent surgical evaluation -- the surgical resident and I literally met the ambulance crew and saw the patient on their stretcher in the intensive care unit. The patient clearly had an acute abdomen -- massively, tensely distended -- and she was quickly rushed off to the OR.
This young African-American woman, then in her 40s, had cerebral palsy. Her developmental disability had proven too much for her family when she was still very young and so she became a ward of the state. She was, when young, a patient at the infamous Willowbrook at the very time when its inmates were the subject of human experimentation -- specifically they were injected with hepatitis, -- vulnerable human beings intentionally made sick by American doctors as a method of study.
(Horrors of Willowbrook (there were other horrors too) would lead to a large discussion about human experimentation in American medicine, reforms in the care of the mentally ill and developmentally disabled and the creation of Institutional Review Boards to govern human research. They also helped make careers for Geraldo Rivera and others.)
More recently, my patient had become a resident at a community-based home, part of the "association for retarded children" network, where she seemed to have a rather happy existence, requiring lots of care but communicating in a rudimentary way with her devoted caregivers. Her biological family had also followed her through the years, and continued to involve themselves in her life, increasingly so as she aged. Technically she remained a ward of the state. This fact soon grew hugely important.
In the operating room the patient was prepped and sedated. A midline incision was started. Her peritoneal juices, under tremendous pressure, hit the ceiling. The surgeons quickly determined that she had suffered an utter catastrophe: her intestines, as a mass, were black and dead -- from the ligament of Treitz to the splenic flexure. The surgery lasted only minutes -- they closed their incision, as there was nothing they could do.
In retrospect the patient likely developed peritonitis -- perhaps related to her percutaneous feeding tube -- that had exploded, so fulminant, so severe as to cause "peritoneal tamponade" -- pressure inside the abdominal cavity much greater than arterial pressures to the intestines, enought to choke off blood supply to nearly the entire bowel. The patient's condition was beyond critical. She was terminal -- no hope of recovery, no matter what. Any further care would be best deemed futile.
At this point the patient had become the surgeon's responsibility. I was no longer directly involved in her care (also I was a medicine resident). Yet I continued coming in each night, checking on her in the intensive care unit.
The state had no provision for withdrawal of life support from its wards -- all efforts, said the law, no matter what. This "culture of life" had come about ironically in part as a result of the Willowbrook scandal. The patient lingered on the ventilator. The state's appointed decision-maker for her demanded that the hospital "do everything" to keep the patient alive -- knowingly against the unanimous wishes of her family.
Nearly all hospitals have an ethics committee (also in part because of the Willowbrook scandal) -- with a ground rule that anyone in the institution may consult that committee. I consulted it.
Naturally I asked if the ongoing intensive care treatment of this patient was ethical (the committee said it wasn't) but I also asked something like this -- what was the ethical and moral obligation of the hospital to other patients under this state in light of this circumstance? The ethics committee said the law was wrong and should be fought. The hospital called its attorney and prepared to contest the law.
The patient lingered for days. Her massive organ necrosis drew flies. She appeared utterly comatose and insensate, a small consolation. Yet her family gathered -- and suffered !!! -- oh their anguish! -- layers and layers and layers of cruel American indignities.
The judges dragged their feet. The patient died.
So much for individual efforts to reform the system.
In recent days at work I have struggled at the bedside of a patient with a particularly vicious ailment -- end-stage emphysema. Like many respiratory ailments, chronic obstructive pulmonary disease can so cripple a body, yet the mind remains crisp. Without mechanical ventilation my patient will die. She does not want life support. Simple? Not so, since, naturally, she does not want to die either.
Layer over this the (usual) profound abhorrence of nursing homes. In particular (if you've ever had the chance to visit one you can picture it), this patient seems appalled at idea of the "chronic vent facility." She thinks she would rather die than live a day in such a place.
She's thinking about all of this tonight. So are her children. Fortunately, if only this once, we have the luxury of a few more hours for discussion.
But we don't have enough time, for this one woman, to build a new system.
The TV has blared 24/7, covering, plastering, the invasive treatments and dying process and the fresh cadavers of Theresa Schiavo and now the Pope. The "great" thinkers, politicians and TV news producers love to turn these into "wedge issues;" as they run with the story they smell the blood in the water -- our blood -- "on a roll." Like the sorcerer's apprentice they seize upon the chance to divide us against ourselves, clobbering us with our own fears, and relishing the chance, and feeling their own might. (Their shrill pitch and clumsy hubris betrays an especially imperial self-image.) While the leaders of American society fall all over themselves to hypocritically invoke the "culture of life," and cone down upon a tragic solitary woman, to probe and stir the murky depths of our fears, they must also do so blindly and with a very long stick.
Of death and dying in America, there is much to fear. Consider the statistic that says that nearly 200,000 people die annually of medical errors. Consider the meltdown in healthcare -- and the righteous mistrust of a medical system devoted to the profit motive. Consider the ICU deaths, intensive care stays longer than 10 days for a third or more of those dying in hospital, with terrifying data that says that over half of dying patients have moderate to severe pain at some point during their last 3 days of life. Consider that people would rather die than experience for one day long term care (a nursing home) under contemporary American capitalism! The objective and subjective data run deep here and everybody knows it. (Heretofore in human history such "choices" did not exist -- kith and kin would shoulder the burden to their maximum ability.)
Poke that with a stick, as the American leaders have just done, and they might just invoke greater, not less, love and kindness. Which is the opposite of what they meant to do by invoking the "culture of life." (No one looks to the present government as the solution anyway -- why not undermine its stature even more?) As Americans rush this week to fill out health care proxies and living wills -- an individual means of protecting themselves against the state -- the idea dawns -- might they have conjured more human solidarity instead of more fear?
The contemporary death scene often arrives as yet another mean ambush, an awkward and even absurd final coda to a long succession of days richly and systematically shortchanged of human dignity. Naturally enough, human beings rise above it, finding each other despite their bewildered grief. That rising requires personal struggle, for this cruel society begets cruel deaths that amount to another swindle, momentarily redeemed by individual acts (ultimately beautiful subversive acts) of human solidarity and love. Yet the brutal system rolls on.
I write as someone who has had the unusual privilege to have attended many deaths (thanks to hospitals being the place where a third to half (or more) of American deaths occur -- and with the hospice movement still growing). I have been humbled again and again by families and individuals rising to the occasion, pulling together, finding their humanity. I have been appalled a few times at finding families sunk by the occasion, devolving, fist-fighting, fractured apart.
On a good day America officially musters a mean- spirited, cowardly and increasingly frail culture which quite lacks the capacity to catch death's eye even for a moment. You could call it the American "culture of life." It is a swift current to swim against, intellectually, this culture of denial and viciousness and preventable suffering. Yet we all must take our turns as our parents, lovers, children, friends, neighbors, coworkers, acquaintances, etc., meet their end -- we must pass through the portals of the culture in which we live. We know that extraordinary personal efforts emerge in the face these hideous social circumstances, yet officially speaking these profound personal acts "wouldn't interest anybody, outside of a small circle of friends."
I overheard my three year-old talking with my five year old the other day. At one point in their conversation the younger one exclaimed "No! I am *not* going to die." The older one responded with characteristic emphasis: "Yes you are. We all die. Because dying is part of life." Out of the mouths of babes.
For those of us who have had a chance in life -- we will not forget that great proportion of humanity's infants and children who suffer and die daily of preventable causes under the keen eye of the "culture of life" -- how we die depends greatly, if not entirely, upon how we have lived. Our individual lives grow despite being so distorted -- so extirpated -- by the cruel minutiae of our social moment, our history and our present. So too our deaths. Any serious consideration of changing the reality of our present culture surrounding the end of life conjures up the crying need for social change of revolutionary proportions. This society is failing us, cradle to grave.
PS "Then I realized a fundamental thing: For one to be a revolutionary doctor or to be a revolutionary at all, there must first be a revolution. Isolated individual endeavor, for all its purity of ideals, is of no use, and the desire to sacrifice an entire lifetime to the noblest of ideals serves no purpose if one works alone, solitarily, in some corner of America, fighting against adverse governments and social conditions which prevent progress." -- Che Guevara (see http://www.monthlyreview.org/0105guevara.htm)